When losing our abilities to FA, the feeling of grief is real

Unsurprisingly, after steering my wheelchair into a wall for the fifth time that day, I found myself amid a temper tantrum. For me, these usually involve yelling curse words at Friedreich’s ataxia (FA), the disease I have. In this particular meltdown, I wanted to ram my wheelchair into the drywall. I didn’t, but I wanted to.

I hate to admit to this lack of control, but I think it may resonate for many with or without FA.

This emotion feels like frustration. When Wendy, my service dog, was awake and curious, I used to tell her, “It’s not you, sweet girl. I’m frustrated.” Wendy would look at me with her big brown eyes, wondering what the ruckus was about. Now she keeps on sleeping because she’s used to it.

Yelling at home to release my frustration feels like a necessary outlet, and I reassure myself that I’m not hurting or bothering anyone. The relief I would’ve felt by destructively punching a hole in the drywall isn’t worth the price of figuring out how to patch it or feeling ashamed because of my inability to express myself in a prosocial way.

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If I’m being honest with myself, however, it’s not simply frustration that I’m experiencing. It’s grief.

Grief is often associated with the sorrow of losing a loved one, but there’s another dimension to it that’s equally profound yet seldom discussed: the grief of losing function, autonomy, and the future as one envisioned it. The relentless progression of FA has meant that my frustration and grief are frequent companions — companions I don’t want, but can’t deny.

I, and many others, have lost a lot of functioning since diagnosis. It’s taken me a while to realize that mourning the loss of functioning doesn’t mean my grief is more or less important than the grief of losing a loved one. Besides, in our brave FA community, there’s plenty of loss of people we love, too.

I’ve realized that I have the right to mourn. After all, I used to be able to walk, type at a decent speed, hang a picture on the wall, and do many other things. I understand that hanging a picture on the wall may seem trivial to many, but it’s a skill I’ve lost to FA. My grief over that loss is perfectly normal. In fact, it would be abnormal not to experience grief.

I’m not trying to compare the grief of loss of ability with the grief of losing a loved one. I’m simply saying both are to be expected and acknowledged as important emotions.

Fortunately for me, that bad steering day was an anomaly and not another permanent loss. A couple of days later, I’m appreciating the transience of that loss. In life with FA, it’s often the hard-to-bear truth that losing an ability is permanent. I’ll continue to express my anger, grief, and frustration over my loss by yelling into the void. Expressing my emotions in that way helps me to move on and keep advocating for myself and my beloved FA community.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.